Living with Multiple System Atrophy. A life limiting, neurological brain disease.


At 39 I am one of the youngest people to be diagnosed with Multiple System Atrophy.  Which is a rare, life limiting neurological brain disease.
There is no known cure. Telling my daughter Rhanna is one of the hardest things I’ve had to do. MSA has destroyed so much of what my family had but it will not beat us and only bring us closer together.

I am  17 years old. I knew there was something wrong with my mum, but she waited till I had finished my exams before she told me that she had MSA, I was just 16. I hate what MSA is doing to my family. I will never give up raising awareness, trying to find a cure and helping other people diagnosed with MSA.

I love Samantha so much and I’m going to fight with her, live every moment with her, and I’m never going to give up the fight, Rhanna her daughter is amazing. We take each day as it comes, cross each bridge together, look forward to a couple of days away somewhere nice, making memories along the way. Life’s too short we know that only too well, we still hold on to hope, hoping for that miracle.


11 responses to “about

  1. John says:

    Hi Sam read ur families comments and it humbled me hope u and Andy are well. Take care John

  2. terry connolly says:

    my heart goes out to you all…………… can be very difficult for some…………..lovely photo of lovely brave people who are facing an unknown future together yet keeping hope alive using each day to ensure some magic moments are made to treasure for later…………….hugs for you all……i will keep you all in my prayers and thoughts. xxx

  3. Claude says:

    Some times we think we are having a difficult time, but reading your story has made realise that I still have so very many blessings. I most certainly have no right to complain. If you guys are able to continue going forward with such courage and love for one another. I can go on as well. I am so humbled. I will pray for all of you. Claude Leto, St. Croix, US Virgin Islands

  4. Sharon says:

    I just found your blog. Thank you for sharing your story. My mother who turned 65 last week was diagnosed with MSA two years ago. It is a terrible, awful disease. It is such a rare illness, it is important to remember there are lots of us out there being affected by it.

    My heart goes out to you all. You are a beautiful, brave family.
    – Sharon, San Francisco, CA

  5. Sam i can only tell you how sorry i am for you and your family. My aunt is from scotland and to has MSA my thoughts are will you all at this sad time xx

  6. Jill White says:

    Hi Sam,
    My husband Mick has MSA. He was diagnosed 15 years ago.
    When Mick was first diagnosed and our home was adapted, ie, through floor lift, shower, outside ramp, downstair loo, all of it engulfed me and I had a breakdown.
    I allowed MSA to take over.
    Now we enjoy life. I hate MSA and the symptoms but I love my man and our life together.
    We are Christians so our faith helps us take one day at a time.
    I like to follow your blogs as I dont know of anyone else who has MSA.
    Good for you for embracing life and living it to the full.
    I love to see courage and that is what I see in you Sam, Andy and Rhanna.
    Keep inspiring.
    Love from
    Jill x

  7. Amy teague says:

    Hi Sam. I have been diagnosed with Dysautonomia and am waiting to go t a major teaching hospital where my doctors expect me to be diagnosed with one wants to be the one to make that diagnosis ,they say it is out of their scope. I have raised three daughters as a single mom and now have custody of my two year old granddaughter. My heart goes out to you and your family, God bless you and keep you.


  8. I am Sam’s cousin and I too did not know about this awful condition and neither did my partner…..who is a nurse!!! I will endeavour to help raise awareness of this and I think it’s important for us all to do so as Rhanna has said. We all think we have moments of ‘bad luck’ and ‘down days’ but then taking into consideration of Sam’s fight and other sufferers of MSA……that’s all they are. X

  9. Philline says:

    Hi Sam,

    I just stumbled upon your blog…my heartfelt sympathies go out to you and your family. I’m just a couple of years older than you and couldn’t even imagine what you are experiencing. My mom is 66 and has been battling this cruel disease since 2004. I hate what it has done to her. Since finding out about her disease, she basically stopped anything that she enjoyed. For the past 9 years she has just “existed” and her only joy has been spending time with her grandchildren. My prayers to you and all those who have this disease and the caregivers. May we all find the peace, strength and courage to keep fighting. God Bless you and your family.

  10. Matt Handy says:

    Thank you Sam for sharing your story and allowing others to experience in a tiny way what it is like living with MSA on a daily basis. I lost my dad to MSA in 2007 and also want to do all I can to raise awareness and funds to research a cure. Thank you again. Love from Matt.

  11. Bethany says:

    Hi Sam,
    Your story struck a chord with me. My mom was diagnosed with MSA (Shy-Drager Syndrome) in 2001 – when she was 37 and I was 18. Until now, I hadn’t heard of anyone else who had been diagnosed at such a young age. I commend you and your family for your courage. I am an only child and my mom and I had a very close relationship. Through her struggles, she managed to keep her sense of humor and her faith. I wish the same – good relationships, good humor, and faith, for you and your family! At the end of the day, that’s what was truly important.

    Bethany, Santa Clara, CA

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